Life! Living with chronic pain.

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I have heard people speak those words regarding people who have had something devastating occur in their lives, wondering why those people seem to linger in their misery long after the initial event has passed. Sometimes it seems people just can’t seem to get past a particularly bad event in their lives. Maybe they stay in grief mode years after a death of a loved one. Maybe they have post traumatic stress for months or years after being mugged. And those around them, whether its people who love them or people who just like to pass judgment on others, can’t help but wonder why the person just can’t seem to pick up life where they left off? Just brush it off and MOVE ON already!

Well, as someone who suffers daily with chronic pain and anxiety related to a botched surgery that occurred in November 2005, let me just say that it’s not as simple as one may think. I truly wish it was. But when every single waking moment is filled with pain from that incident, it’s really hard to just “get past it.” And the anxiety that I suffer with is also hard to just blow off…I suffer with anxiety and worry daily, regarding my declining health, my pain, my bleak future, not being able to do things I would like to do, not being able to make money to contribute to our family, incurring medical bills that keep us in debt, fear of future medical issues, feeling like a burden, and fear of the medical profession as a whole. It’s hard to put trust back into the very group of people that caused your situation. It wasn’t just the surgical mistake the doctor made, it was me laying in ICU for days with infection burning thru my body, eating my insides like acid…with both nurses and doctors not picking up on it. It was that next year where 200 days of it were spent in hospitals, enduring 15 further “repair” surgeries, open wounds, flesh eating virus, pneumonia, blood clots, wound vacs, poorly fitted ostomies, skin infections, central line infections, blood infections…caused by poor medical care in some instances. Nurses who didn’t wash their hands properly for instance. There was one instance I can prove this, I was of course very ill, laying in a hospital bed, a CNA was caring for me, cleaning me up for the day, and during the bedbath she had to wash around my central line in my chest, so she would touch it and move it aside during the bath. She was young and very sweet and I liked her, she was one of the few who actually talked to me and treated as a human being in the bed rather than some practice dummy. She and I were conversing, mostly her since I wasn’t feeling real chatty, but she used some little hand sanitizer she pulled from her pocket before she left and I said it smelled good, she said she got it at Bath and Bodyworks and she had many, so she handed the little container of sanitizer to me saying I could keep it. I said thank you of course, and she sat it on the bedside table and left. The lighting in the room was dim, but later I turned on the over-bed light and picked up the sanitizer…it was then I noted the little bottle was smeared with fecal matter. Yes…POOP. So, obviously at some point the girl got poo on it but didn’t realize it and was then squeezing it onto her hands to “sanitize” her hands, but was really contaminating her hands in the process…

So, that long story was really just to show that when we are helpless in a hospital or nursing home setting, we are depending upon the medical professionals caring for us to follow Universal Precautions to help keep the rate of infection down. But sometimes they do not. Sometimes they don’t wash their hands, or don’t do it properly. Sometimes they think, “I was wearing gloves when I cleaned up that poop, I don’t have to wash too” and move on to the next person. But maybe the glove had a tear or small hole. Maybe some of the matter got on her wrist or her shirt or her stethoscope (another potential portal of infection), they maybe washing a dirty area then wash a clean area, or touch your IV caps or your foley cath tubing when emptying your bag…there are so many ways for infection to spread. They don’t mean to. They are just trying to do their jobs…which are extremely stressful, with the corporation rules, the constant short-staffing and heavy patient loads, the management breathing down their necks to keep costs down but do more work…it’s no wonder there are so many staph infections and MRSA infections, among others that get spread throughout healthcare settings on a daily basis.

But, this entry really wasn’t supposed to be about infection control…so I apologize for the tangent. My point with that was that I ended up with so many hospital acquired infections during that horrid year, and witnessed so many medical mistakes…wrong meds they attempted to give me, watched them perform treatments or instill meds in ways that were not following proper protocol, leaving me to lay in a dirty bed for far too long, or just being unprofessional or even, I am sad to say, downright cruel in some instances…I had one aid strip me down and park me in a shower chair, tossed a rag in my lap and left me there under the cold running shower, while she went to do something else. At the time I couldn’t stand or walk, I had lines coming from everywhere, my intestines were open with my belly having a softball sized wound, covered in saran wrap and hooked to a wound vac…a foley cath to collect my urine, and was so weak, ill and drugged I could really barely speak or move. I sat there with my teeth chattering, naked and vulnerable, freezing water spraying on me, no call light in reach and unable to call out for help. Another aid came in and half way dried me off, threw me in a gown and rolled me back to bed.

Nurses who yelled at me for wetting the bed, or soaking it with perspiration during high fevers or the hot-flashes after the ovary removal. A doctor who was abrasive saying “This is the hand you were dealt, you gotta decide how to play it” when I was fighting for my life…and just trying to live from one minute to the next.

So, yea…I have anxiety issues when it comes to the medical profession. I must go to the doctor every month, the Coumadin nurses every month…and I live in fear of my intestines becoming blocked or twisted by adhesions and ending up back in the hospital, facing another surgery in a life or death situation. Or having to go due to bloodclots or heart problems.

Every single day since that botched surgery has been filled with pain and anxiety. They can’t fix the physical or mental damage that was done. They can throw meds at the problems, but they can’t fix them. They believe and understand the physical pain I am in, like they said, “You can’t be cut and sewn and cut and sewn on one area of your body as many times as you have been and not have long-term consequences, the adhesions have become rubber band tourniquets around your bowels Tammy, you can no longer digest food properly and the nerve bundles have been sewn up into the tissue adding to the pain cycle, the ventral hernia which we cannot fix will continue to burn and cause pain, we are sorry that all we can try is to keep you comfortable and keep your nutrition supplemented” oh and there’s always the “We are so sorry you have had to live thru this unattended mishap.”

I wake up and the pain is there, I can’t sit up from a lying position without first rolling onto my side. I walk hunched over much of the time because standing strait sometimes makes the pain worse. I cannot cough, sneeze, laugh, yell or blow my nose without bending over and splinting my belly and God help me if a sneeze catches me off guard! Of course running or most exercise is out of the question. I can walk, but not for long, extended periods. I can dance, (badly)…but carefully and not for long, I can’t lift more than 10 lbs, can’t pull wet towels out of the washer, I can’t eat red meat, raw veggies or fruits, fiber, nuts or seeds or dairy, I can’t do much of what a normal healthy person can do…somedays I can’t leave my bed or couch due to the pain in my abdomen. When I do leave my house, I put on my “normal face”…I walk straight even if it hurts, I smile at people and chat with people, I get my groceries and put them in my car…I’m so good at my act people have no clue how I’m really feeling…but what they don’t see is me getting into my car and driving away sobbing…but CAREFULLY sobbing, because I don’t want to cause more pain…getting home and waiting for the garage door to shut so I can walk all hunched over, crying, holding my belly, carrying in the groceries and putting them away…then laying in the fetal position, as still as I can, while waiting and praying the pain med will atleast take the edge off so I can take a breath without feeling like a knife has been plunged deep into my gut.

My life was completely altered by that botched surgery and the events caused by it. I usually say that I died that day in the operating room…because a part of me truly did. I’m not the same person anymore and never will be whole again. I feel I would’ve been better off for them to have cut off my leg, because atleast that would heal…my insides can’t heal and they can’t just be removed. The pain and scarring from that ordeal is permanent. The change in my psyche is permanent.

Sometimes things happen to us in life, where it’s just not so easy to move on and forget it. When the memory of it hits you in the face everytime you move or cough or take a deep breath…how do you just “get over it already?”

Just as when a loved one dies…who’s to say how long you should grieve? You will never just get over losing that person…your heart will always feel heavy at the thought of them being gone. Or your house burns down, taking everything you own…yes, you can get new stuff and a new house…but its still a trauma that you will carry with you, even if just the fear of fire.

I do what I can to lead a normal life. But it truly is controlled by my pain on most days, even if I can walk and smile my way thru the store or at church…its an act…its not me…because ME is balled up in pain, sobbing and begging God to get me thru the next sixty seconds.

I would honestly give an arm or a leg, if it meant the pain would be gone or even lessened by 50%…maybe then I could “move on” but really I don’t think one ever truly just moves on after a traumatic event in their lives, they just learn to shove it down and hide it from the world, because it’s just not tolerated otherwise.

What kind of hand were you dealt? If you have had a strait flush your whole life…be very grateful…and if your holding jokers like me most of the time…I feel your pain!

Cancer! That is what the doctor said, but what she heard was DEATH! She couldn’t believe her ears! “There has got to be some mistake!” This just can’t be happening to me, she kept thinking over and over…I am just getting used to living with Lupus…I can’t do cancer! But here she was…just beginning to deal with “The Big C!”

It was found during a routine pap smear. The yearly test women despise. It was stage 3. Fairly advanced. But encapsulated to the cervix. They recommended a total hysterectomy. She was fine with that. She hadn’t intended to have more children. It was scheduled for the next week. This was all happening so fast! She still hadn’t wrapped her head around all of it when she was telling her family. They all had so many questions, to which she didn’t yet have the answers. Being an analytical type, she of course got right on the net to research this new monster that had invaded her body. Afterwards, she wished she hadn’t. So many sad stories. So many bad outcomes. She was scared. She lay on her bed in the fetal position and cried…and prayed and prayed and prayed.

She and her husband showed up at the hospital at 7:30am. The surgery was to take a couple hours. She could go home tomorrow. She was on the stretcher, donned in the beautiful hospital gown and cap. Feeling very, very vulnerable and fearful. She jokes around with her husband and the staff…hiding her fear. The doc came in, the three of them held hands and said a prayer. She was wheeled into surgery…she looked deep into one of the nurses eyes…and squeezed her hand, as the general anesthetic was pushed into her IV…a tear slid down her cheek.

She awakens, she feels heavy. Her mouth feels dry…something is lodged in her throat! She tries to move her hand to her mouth, but she can’t move her hands! They are strapped to the bed! She looks side to side…her husband is there. “What is going on?” She wanted to scream…but she couldn’t. She was on a ventilator…the hissing sound as it pumped air in and out of her lungs was audible. She goes back to sleep. The next few months are a blur. She is heavily medicated. She has multiple hallucinations due to the medications, some were horrifying. She remembers trying to climb out of the bed. She has unbearable pain in her abdomen…pain like she had never imagined! It feels like her belly is on fire. She is in and out of consciousness and being unconscious is preferable to be certain!

When her mind is finally clear enough to figure out what has happened to her, she can not believe it! Her luck! Evidently the surgeon had made a surgical error and punctured a hole through her intestine, this is a complication that can occur with any abdominal operation, but it’s rare, and when it does occur…it is usually noted rather quickly and measures are taken and recovery is generally speedy. Unfortunately, it was not noted quickly and by the time it was diagnosed, alot of internal damage had been done. She was septic. Her intestines had become so infected they were like wet tissue paper when the next surgeon went in.

She would end up losing a large portion of her bowel. She would end up with an ostomy…but not a normal ostomy…it couldn’t really be done in the normal fashion, so the bag wouldn’t seal properly and therefore there were always leaks…this caused major skin breakdown and irritation. She had peripheral lines it seemed everywhere! In her clavical area, her armpit, her hand…the catheter for her urine…she felt like an alien.

She couldn’t stand to even look down at her own abdomen. Therefore she could not perform her ostomy bag changes or empty the bag. She would have to put her call light on and have the nurses come and do it…some of them would get rather irritable with her. They felt she should do it herself. But it looked horrid! Her bowel was sticking OUTside her body! She was in so much pain and had grown so weak from laying in a hospital bed, it was also just physically hard on her to do anything…she was doing physical and occupational therapy twice a day. It wore her out…physically and emotionally. Some days she would just feel like giving up. She felt like she would never be the same again, would never be useful again…couldn’t imagine living with this pain everyday!

Her husband was there at the hospital with her everyday. She lived for the moment he walked in the door. She knew when he was there she could rest. Or have someone to talk to. She wasn’t allowed to eat, and could only drink limited amounts. She was so thirsty! The commercials for food and drinks on the tv would just about drive her bizerk! She was too weak to read, she couldn’t hold the book up. The only thing she had to pass the time was tv and when her family visited. She felt somedays as if she was going out of her mind. She felt like a caged animal…an ABUSED caged animal at that! To add insult to injury, her hair started to fall out in huge clumps! She had bald spots throughout her scalp…she had always had extremely thick and wavy hair…now she is going bald. Also, she was going through menopause due to the ovary removal…the hotflashes where awful! She felt like she was having a heart attack frequently. Alot of the nurses were not sympathetic to her physical complaints. They acted like she was being a whiner or something! One evening she complained of being short of breath. The night nurse took her time coming into her room, even after she had told the cna about being short of breath and having chest pain. When the nurse did finally come in her room, and took her vitals, she said”Oh, you’re fine! You just need to work harder in therapy! You’re getting lazy!” She could not believe this. She knew something was wrong! She was having a heart attack! “I need help!” She told the nurse…the nurse left her room…she was scared to death she was going to die right there!